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Pat LawsonParticipant
Rose, I’m so glad to see you updating your diary. I pray for strength for both of you. Have you and your husband returned home yet or are you still staying close to the hospital?
August 8, 2019 at 11:25 am in reply to: Survey: How many MDS patients on high blood pressure meds #48676Pat LawsonParticipantSally,
I need to correct my original post. My husband was on Lisiniprol and Amlodipine for years and the cardiologist at the hospital stopped the Lisiniprol and had him continue to take Amlodipine for his high blood pressure.August 7, 2019 at 1:49 pm in reply to: Survey: How many MDS patients on high blood pressure meds #48670Pat LawsonParticipantHi Sally,
My husband was diagnosed with high risk MDS back in October and I put a similar post out asking if anyone thought that the blood pressure meds might be connected to this disease. My husband has been on Norvasc and Amlodipine for years and he is currently still taking Amlodipine. When he was in the hospital just prior to diagnosis (he only had 4 pints of blood left in his body at the time) the cardiologist thought there might be a connection with all the blood pressure meds he was on and stopped the Norvasc and had him stay on the Amlodipine for his high blood pressure.
Pat LawsonParticipantPatrick – I pray that someday my husband will someday accept this. But right now with the 2 treatments he is on he is basically down for 2 weeks each month because he is so fatigued. He was a very active man still working in construction before he was diagnosed with this disease. He landed in the hospital in October so weak and out of breath and found out at that time that he only had 4 pints of blood left in his body. I started writing in this thread back in May and he had just had a biopsy showing his blast count and claimed he was in remission so at that time he was very hopeful. He thought that he would be able to get back to somewhat of a normal life as weather had warmed up here in Maryland. But as I’ve said these treatments are taking a toll on him and now he is sick. He went for blood tests last week and his WBC was at 0.6 and his hemoglobin had dropped to 9.4 (it has been staying at 12-13) Red blood count was down and platelets were down so I know that has him worried. We will find out tomorrow if he can even start his treatment because they do blood tests before they start. He is due for another biopsy in August. I pray for better days. Thanks for listening.
Pat LawsonParticipantPatrick, thank you so much for this information. He starts treatment again on Friday and he has been struggling with head and chest congestion for the past 2 weeks so he has become very depressed. I will ask the doctor about Revlimid. Because he is in a trial they are probably going to go against it. They told him that a stem cell transplant was the only cure for his cancer so we met with the transplant doctor and he decided not to go that route because this trial seemed to be working and he didn’t like the odds they were giving him for an actual cure with a transplant compared to all the risks of other things that could go wrong. But these treatments are taking a toll on him. He is actually receiving 2 different chemo treatments each round. Depending on what his doctor says I wonder if we should go see another doctor. Unfortunately if he decides to try this medicine you’re on he won’t be able to get back in the trial if it doesn’t work but it’s definitely worth investigating because at this point he is losing all interest in life and questions going on with treatments
Pat LawsonParticipantDale, He started the trial in November 2018 RAEBII blasts were 11%. He has not needed a transfusion since January. His counts fluctuate in between treatments but his hemoglobin has been staying pretty steady. In May his bone marrow biopsy showed that his blasts were under 3% so they consider that remission but he cannot ever stop treatments. He is 65 years old. We hoped and prayed that it would go into remission thinking he would be able to stop treatments and go on with a somewhat normal life but we learned that he can’t stop treatments and this is his life now. 7 days on Vidaza 14 days on Venetoclax and 2 weeks later start all over again. It’s taking a toll on him, depression takes over and he has a hard time accepting what his life is now. My heart goes out to everyone dealing with this disease and I pray that someday there will be a cure. This trial that he is on is not a cure it is and hopefully will keep giving him more days to live.
Pat LawsonParticipantDale,
I found the trial at University of Maryland Hospital in Baltimore. We initially tried Johns Hopkins but they did not have a trial for him to go into. Here is a website you can go to to read more about it.
https://clinicaltrials.gov/ct2/show/NCT02942290
Roll down towards the bottom of the page and click on 32 locations of the study and it will reveal where they are located.
Pat LawsonParticipantMisty,
My husband is in his 7th round of Vidaza. He is also in a clinical trial and they are giving him Veneteclax which has been FDA approved for AML so they are testing to see how it does for MDS. He has had a great response. His MDS is considered in remission. He was having regular blood transfusions when he was diagnosed with high risk MDS with excess blasts back in October but he hasn’t had to have a blood transfusion since January due to the treatment. They give him Zofran for nausea just before treatment and he his biggest complaint is fatigue. We just celebrated his 65th birthday this past weekend and he was up and going until late into the night. I hope this is helpful to you. God Bless.Pat LawsonParticipantSo glad to hear that he is doing so good!!!
Pat LawsonParticipantClinical Trial #NCT02942290
Pat LawsonParticipantThe doctor who is treating my husband in the clinical trial said they are trying to fast track Veneteclax for FDA approval for MDS because the study is going so well. So it could be possibly approved by August but that is not for sure.
Pat LawsonParticipantMy husband is in a clinical trial since November using Vidaza and Venetoclax and he is having great results. It is not FDA approved for MDS yet but because it is working so well in the trial phase they are saying that it could be approved by August for MDS.
Pat LawsonParticipantKeeping you both in my prayers. Hope you have a good weekend!
Pat LawsonParticipantRose,
How long are they saying he will be in the hospital? Are you staying at the hospital with him and if so do they let you stay overnight in the room with him?
Keeping you both in my prayers. Stay strong.Pat LawsonParticipantRose thank you so much for publishing your diary on this site. My husband is going to meet with a transplant doctor this Thursday and I am so scared. He is in a trial right now and the doctor says he is responding beautifully to the treatment. I feel like he should just stay on the treatment since he is responding so well but his depression seems to be getting worse knowing that just doing treatments means that he has a limited time in this world. I am praying for strength and healing for your husband. Please keep up your diary it is greatly appreciated.
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